I just hate cancer. HATE IT. I know negativity is bad but I hate it. I want you to feel better. I want everyone to feel better. I feel like a child having a tantrum.

I pray the pain eases again.

Hugs,

Lori

Sent by Lori | 7:25 AM ET | 01-30-2008

Good Morning Leroy! Oh, we have winds today and they will bring change , just as you speak of constant change in the way you feel lately. What experiences and sensations you are having. I wish that I could truly "feel your pain" for just a moment in order to understand what you are going through.
Of course your mind may be playing into those feelings of doubt & uncertainy. You have had a lot thrown at you in the past couple of weeks. How can you get your thoughts wrapped around the ordeal you are facing? It does seem that you were better off before they tried to put that "sell by" date on your forehead. Does the medical profession go too far? We need some faith in good ole Mother Nature and the natural progression in each, different, individual. We are not cattle in a pen. Have these doctors ever felt what you are going through? How can they tell an outcome? I noticed that lately doctors are hesitant to even make predictions, for fear of ? ?. We must take it all as it comes. A new experience for each of us. What you are going through is your own, private, war. You are still in control!

Sent by J C R | 7:49 AM ET | 01-30-2008

Great plan, Leroy.

Where do you pull from when this happens to you? Everyone seems to have someplace that they pull from -- family, friends, spirituality, blog communities.

Or do you try to lose yourself in something else? Movies, novels, reality tv?

I guess I use a rotating combination of all the above. What about you?

Sent by jordis | 7:55 AM ET | 01-30-2008

"normal.....ah, normal" - what a place to be.......
Hang in there, Leroy, the "new normal" is around the corner, and you'll get there!
Hugs and prayers......

Sent by Ruth Chermok | 8:03 AM ET | 01-30-2008

Leroy,
My father always used to say, that was the way life was. One step further and two steps back and we keep going that way until the steps back continue. So.............we are still in good shape, we are still getting that one step forward. I always think of life that way....maybe it will help. Or do as you say...run for the hills!
Wanda Amorose

Sent by Wanda Amorose | 8:08 AM ET | 01-30-2008

Keep building on that play Leroy, it's a good one.
Linda

Sent by Linda Bongardino | 8:17 AM ET | 01-30-2008

Leroy -

I find myself at a loss for what to say. I never want to sound trite or cliche. I think that would be insulting to you and the community you have created.
But often these days as I read of your struggles with the beast I find myself typing and erasing, typing and erasing, unsure of what is best to say.

Today I hope you find a way to be more comfortable and that the pain subsides.

Sent by Melissa T | 8:23 AM ET | 01-30-2008

Dear Leory,
I am sorry to hear that you have not progressed toward "normal" over the weekend. I pray it is just a temporary hump in the road and that you will soon be feeling better.
Our family is going through some trials right now besides our cancer issues. I just keep praying for a little joy to return to us all.
I have an appointment with a new oncologist here in Pennsylvania today. I hope it goes well.
Charlotte in Rural Ridge, PA

Sent by Charlotte Kewish | 9:05 AM ET | 01-30-2008

Leroy,

I am sorry about this hopefully minor set back. Perhaps it is scar tissue. Have you followed up with the acupuncturist or massage therapist???

A little warm pack... teddy bear to hold?

Hang in there... And keep moving, maybe that will help keep things from hurting so much.

Sent by Sue Chap | 9:08 AM ET | 01-30-2008

Do your doctors read this blog? It should be required reading for them. There seems to be a disconnect somewhere and you are right "It just doesn't seem fair". You bravely submit yourself to procedures that cause significant pain a disability while those responsible for those procedures carry on with "business as usual" without any consequence to themselves. Being stoic is apparently a poor choice. You are not being heard by the ones responsible for your pain. Makes me want to picket their homes and offices until they find a way to help you regain some painfree normalcy in your life. Please don't just suffer quietly allowing those in charge of your care to carry on with their own lives while ignoring the consequences that you alone suffer as the result of their actions. Perhaps seeking some 2nd and 3rd opinions is long overdue. It is SQUEEKY wheel time! Make them hear you loud and clear.

Sent by Ned Toknow | 9:09 AM ET | 01-30-2008

hi leory, i hate running in circles too. i understand your need to get off of that horrible wheel and go on your way. this sounds goofy, but try to rent dvds of myth busters. i know it sounds nuts, but trust me it helps.

Sent by sarah | 9:29 AM ET | 01-30-2008

Maybe you overdid it on the good days? I know on the east coast today the weather is not so hot, all my "algias" and "itises" are acting up and I want to curl up and go back to bed. I hope as the day goes along you will feel more human. Ginger hugs to you

Sent by Alycia Keating | 9:31 AM ET | 01-30-2008

If only we could sing "pain pain go away" and it would come true. The pain is there but what is worse I think is that your weariness is tearing you down. It can be a slippery slope.
Sometimes my solution is to escape from my bodily constraints and try my very hardest to look beyond my pain. Failing which I tell myself that "this too shall pass", soon I hope.

Sent by christine | 9:34 AM ET | 01-30-2008

You know Leroy - another thought just came to me. How can the doctors and the Hospice people possibly "teach us" how and when to die with Cancer. They know so very little about this beast and yet they have the gaul to put a time limit on your life? Why don't they try to find out what causes IT to grow, how IT begins in the first place, and why after all these years, they have made so little progress?
Can we try removing the word "cancer" from the mix? Wouldn't you be in as much pain if you had been hit by a truck and were laying there in agony, trying to mend? The only difference would be that you would not have "six months" hanging over your thoughts. Getting well is what you would be thinking of. So now, think about getting well Leroy. You, of all people, can do it. Show 'em!

Sent by J C R | 9:39 AM ET | 01-30-2008

Sounds like a great plan...We ALL need a plan...Praying for less pain for you...

Sent by Julie | 9:41 AM ET | 01-30-2008

Hey, LeRoy, Would you like us to write blog entries for a certain day, which maybe you could write comments to, instead of your usual writing the entry and getting comments from us? Maybe you need a change of pace, a bit of a challenge mentally, in order to get you to feel better. Just give us a date and we can write something for you so that you can express yourself in reverse with comments. carol

Sent by carol irvin | 9:41 AM ET | 01-30-2008

Leroy,
Every day is a step forward. You must remember that. It doesn't mean that what you have to endure on any given day is easy, but the fact that you are still here to endure it--that is truly a gift, even if it seems like one in disguise.
I always like to think that god doesn't give us more than we can handle. Sometimes it takes a long while to figure that out.

Sent by Kathleen, NJ | 9:46 AM ET | 01-30-2008

All I can say is how sorry I am for the pain you're going through. Instead of filling up this space with too many words, I'll leave you with a link to the poem DESIDERATA. Peace, Leroy.

http://mwkworks.com/desiderata.html

-Judy Fuller

Sent by Judy Fuller | 9:46 AM ET | 01-30-2008

It's a dance Leroy. One step forward, cha cha cha, two steps back, cha cha cha... aways ready for the side side side... one, tow, three, four...

Seriously. I think now might be the time for a trip to sunny Florida. Have you seen the Dry Tortugas? Might be a bit tough to get there, but I think a bit of a break from your routine would be a help.
Thank about it.

Sent by Brit | 9:53 AM ET | 01-30-2008

That elusive normal, new or otherwise - I hate that it keeps moving for you, for me, for all of us. Every time we have another procedure, get bad news, feel a new pain, we have to sort of "reboot" to find another normal that we all want so badly.

Kim B., from yesterday - I'm glad you mentioned that you have a therapist, because I've been worried about you since your post of a couple of days ago! I hope that knowing that you have the support and love of Leroy's blog family will help you through this dark patch. Don't let cancer win by extinguishing your spirit - maybe try to let that be the one thing it can't reach. I will be keeping you in my thoughts and prayers.

Sent by Gretchen Hoag | 9:57 AM ET | 01-30-2008

Don't you wake up opening one eye at a time to first survey the land. I know the feeling but have to thank my lucky stars I'm pretty close to normal again. I feel for you.

Sent by lisa | 10:04 AM ET | 01-30-2008

Good Moprning Leroy, Laurie and All,

Leroy, I am sorry to hear that you are in more pain again. That is indeed a BUMMER!! I hope you are taking your pain meds as needed and not trying to "Tough it out." Sometimes as nerves are healing it hurts like h--- for awhile but then things are much better than before. I hope this is the case for you now. In the mean time pamper yourself and let Laurie stroke your brow until you feel better.

To Chralotte, I hope that all is soon taken care of with your family. And good luck on your first appointment with the new oncologist today.

To All, I know the ups and downs of
Cancer can be draining to all involved. But we are all in this together and there is new research going on every day. So we do have a lifeline to hold on to and that lifeline is HOPE! God Bless!!

Eileen Pruyne
Charlotte, NC

Sent by Eileen Pruyne | 10:09 AM ET | 01-30-2008

Leroy, This is one of the biggest reason to use hospice. Their experience with pain control is your resource. You don't always have to be strong or tough.
Pain management properly administered is what you need.
keeping you close,
Leah

Sent by Leah | 10:09 AM ET | 01-30-2008

Dearest Leroy, Might your present increased pain be your body's initial reaction to the heightened activities over the weekend?

And yes, normal would be delicious! I am hoping that through every vicissitude, you can still identify and live in the portion of your daily experience that still feels like you, like home base. Home base may move around and take on new hues and textures on different days. But consider whether you can still feel like you -- in all these new circumstances. Bodies change, but there feels like something so much freeer and more timeless apart from the body which can be a less changeable command center some days when the body is otherwise occupied. If not spirit, then maybe your core or other concept for this would give you an unhindered base of operations despite what your body is facing.

And your intellect. You have your own ways of finding and creating and conceiving of your self and where you stand. I remain moved by your raw honesty and grace and I continue to urge you to take whatever time and energy you need for YOU on days you'd rather not have to blog.

Sent by Sarah (Virginia) | 10:11 AM ET | 01-30-2008

Good Morning Leroy,
Things are windy and cold here in WV this morning. Just wanted to say that a lot of times when we are in the healing process we do take one step forward and two steps back. Maybe tomorrow you might feel totally different. Try to get thru today and we will all think positive about tomorrow. Big hugs to you and Laurie

Sent by Teresa in WV | 10:18 AM ET | 01-30-2008

Leroy,

I'm with Leah. Use hospice and fire them later if they are not needed. Their ready availability and expertise in pain management would surely help. Couldn't hurt. To use your language, it will help you feel more normal.Meanwhile, whatever you do, we're all behind you. You are on our minds and in our hearts.

Blessings.

Sent by Diana Kitch | 10:40 AM ET | 01-30-2008

Normal. What meaning that word carries that it didn't before cancer. Pain is weird - it comes and goes for no apparent reason. I thought cancer pain would be a constant. But some days I barely notice it, others it keeps me in bed with a book. I hope you make a few steps forward today and get some relief. I hope you get some "normal" days soon.

Sent by Marcia Greer | 10:46 AM ET | 01-30-2008

Leroy,
I read your blog daily - and I am so sorry that pain seems to be rearing it's head yet again.
I am the Volunteer Services Manager for VITAS Hospice here in Milwaukee and would encourage you to talk to hospice again about their knowledge of pain control. I can speak from experience as my volunteers visit our patients - many of whom are "hospice appropriate" for years and not just months.....there is no exact calculation and your hospice nurse was not completely correct when she said something like "hospice = six months". We are helping our patients find quality of LIFE and pain control for often much longer than that!
Take care - and know that MANY people are sending prayers and well wishes your way.

Sent by Linn Woodard | 10:56 AM ET | 01-30-2008

Leroy...everyone this morning has already said the things I feel for you. It appears we ALL wish you comfort and some relief from the pain you are feeling. Amazing what the body can tolerate... and yet you always find time to drop us a line. Bless you my fellow cancerian or is it cancerite---probably best said as "person living with cancer". Good to have that "step forward"!

Sent by Jo Ann Baswell | 10:59 AM ET | 01-30-2008

Ah Leroy - to go back to normal. I'm with you on that. The cancer beast is so freaking unfair. It sucks. I pray you'll feel better soon and be able to have that sense of steps forward again. Cliches seem so superficial but I don't know how to express other than take it one day at a time. Tomorrow will be another day and hopefully, pain free.

Sent by Kim | 11:00 AM ET | 01-30-2008

So sorry about the pain. Did hospice offer any assistance with pain management?

I was inspired by Sara's email yesterday saying she had just had her fourth lung surgery. I met with my surgeon today and he is willing to do my right lung (they did the left lung last July). It helps to know that someone has survived four! I have had many surgeries but last summers lung surgery was the most painful I have had. Anticipating another one is a bit overwhelming but once again, it beats the alternative. I have an option and for that I am grateful. Not a cure but another chance to buy some time.

Sent by Dona | 11:00 AM ET | 01-30-2008

Good plan Leroy. Normal. It is one of those wonderful meaning filled words, like "home" or "Mom".
Pain is my reminder of what I have endured, and that I am still alive and able to feel all that life has to offer. A blessing? well,,,I wouldn't go that far :). Take your pain meds, I believe in better living through chemistry. ( I wish I could take credit for that phrase,,,don't know where it came from but I love it.).
Was it Scarlet O'hara that said
"tomorrow is another day". Duh.

Sent by Theresa Lovin | 12:04 PM ET | 01-30-2008

Thank you Leroy, for coming to this place every day! Thank you Melissa T., for clarity. As an occasional reader with my own cancer dance, I'm feeling you all and sending a big rose-colored hug, to hold us all through this winter. Blessings.

Sent by Joan S. | 12:10 PM ET | 01-30-2008

Hi Leroy,
What the heck is normal??? After being forced into disability because I ran out of sick leave and THEN a one month back to back upper respiratory/pneumonia where I coughed up a lung or two. Whew!!! Good God! What us cancer patients have to go through!
ANYWAY - that's NOT the reason I'm writing. My Mother in Law recently purchased a "sleep by number" bed that is adjustable, you know, like a hospital bed. She's not sick at all. I thought you might go shopping when you feel a little better and check them out. You can raise or lower the head to any number of positions, as well as the legs. And when you want to sleep? Lower that baby down....I can imagine how cool it is for reading, watching TV, doing puzzles, etc. They come up in sizes from single to king size. The down side? Not cheap, I hear. Don't think of it as a hospital bed - just a bed that allows you to feel comfortable in whatever position you need that day.

By the way, I have cancer from between my shoulder blades to my pelvis (including my pelvis). Back pain is something I can relate to. It's not necessarily about living longer - it's about living as comfortable as possible for as long as you can. Being in pain wears you out. Do whatever it takes to bring you relief.
Live well,
Anita

Sent by Anita Apodaca | 12:10 PM ET | 01-30-2008

LeRoy - I'm so sorry to hear about your constant pain. Even through these tribulations, you still keep your positive attitude, and this is very good. When I was going through my cancer I always kept a bright outlook on things, and I really think it helped.

Sent by Sue | 12:20 PM ET | 01-30-2008

Leroy, I would like to say to you that I understand. Oh, I think I do, but of course, I do not. It hasn't happened to me. My granddaughter, yes. All I can tell you is do everything you can that you physically feel like doing that makes you happy. CANCER IS NOT FAIR. I am sorry to say the doctors do not understand either. You spend a lot of wasted time trying to beat cancer, and you feel terrible, and cancer raises it's ugly head, constantly. You cannot feel good. Do you continue to fight or do you make the most of what you have? Of course, you fight, it is human nature. I know there is a better place in heaven but we all have people, things here and we keep trying. I know Ashton does not hurt anymore, and since she loved to dance I know she must be dancing on streets of gold, but I miss her. I keep thinking did she know how much I loved her, did I show her, did I give her everything she wanted and needed while she was with me. It never leaves my mind, and I think about cancer all the time and I do not have cancer. Is that fair? Did I contact the right doctors, everybody has an opinion, but cancer is cancer and it never goes away, CANCER IS NOT FAIR. I enjoy reading your comments and you let so many people know that cannot understand about cancer. I pray that GOD WILL BLESS YOU. You bring so much more to the table than doctors do.

Sent by mavis | 1:02 PM ET | 01-30-2008

Leroy,

I said a little prayer for you. asked to take your pain away.

You ONLY step forward, and generously take all of us along on the journey.

Sent by claire | 1:31 PM ET | 01-30-2008

Nothing clever nor profound to offer beyond what has been said.

Just a note to let you know my prayers each day include you and Laurie and the many members of this cancer blog family!

Sent by Al Cato | 1:50 PM ET | 01-30-2008

Leroy:

We found that a baby pillow used around the nursing mother's waist was a great aid for pain. You can get them at Target. They look like a donut with a piece cut out and can be molded in various shapes.

Kim B. Don't give up. Our thoughts are with you. I was worried about Burge at times, but he realized that he could always wait "until tomorrow" to make the decision to take his life and thankfully, tomorrow never came.

Nikki

Sent by Nikki | 2:25 PM ET | 01-30-2008

Hang in there Leroy. Your plan sounds good, it's only human to think the worse, but hang on to your plan. Thinking of you and praying for you too.

Sent by Ruth White | 2:29 PM ET | 01-30-2008

Try EVERYTHING - pets, aromatherapy, music therapy, massage, mediatation, white noise, etc.

Sent by bettye | 2:46 PM ET | 01-30-2008

Hey Leroy...
It's Rebecca (Al's sister) from the Bay Area. I think about you every day, and send (my version of) prayers and positive energy your direction right after I read your daily post. Hospice folks are nice and all... but I've heard too many stories of people getting 12+ months of hospice care to take the 6month code seriously. You are alive today and you will be alive tomorrow & the day after that & the day after that... and we'll just keep renewing the contract each day after that, okay? Just look at all the people you have helped & united with this blog. You are such a good guy. I hope hope hope hope something will work on the pain soon, and bring you some relief. Hang in there... xo, rebecca

Sent by Rebecca Corral | 3:58 PM ET | 01-30-2008

Leroy, All I can say is I'm sorry for what you're going through.

Cancer is not just a beast--it's pure evil. Most of us who have gone through a 'dance' with that beast are so completely surprised when it raises it's ugly head that it leaves us breathless. We were brought up to be nice and polite. The beast does neither. It does not fight fairly. It does not give us a head's up as to what it's next move will be.

In the end all we can do is fight the good fight with grace, dignity and the knowledge that we've done all we possibly can for ourselves.

Peace and prayers. Kathy

Sent by Kathy Barney | 4:31 PM ET | 01-30-2008

Hi Leroy.

"...feeling like myself..." gets to be elusive with cancer -- with each day bringing the unexpected...not knowing how to plan or what to expect. I hate that uncertainty.
But bless you for putting it right out there. Those of us who are walking this same road, offer you our strength and hope, as well.
Dick

Sent by Dick Lehman | 4:55 PM ET | 01-30-2008

Leroy,
Having been a physical therapist for 30 years, I can tell you that when you are in pain and you have a good day, you tend to increase your overall activity level. Your body and muscles are not used to this and react by being in pain. So a good day is usually followed by several more painful days. Having a good day is a good sign...just try to gradually increase your overall activity level. And....ice after activity helps to decrease the pain.

As a stage IV breast cancer patient, I can relate on how much the whole situation stinks. I hate having my doctors tell me that there is no cure but go out and enjoy the life you have! Yeah, right!

Sent by Mary Cannon | 5:17 PM ET | 01-30-2008

Hi Leroy,

I hope you feel better very soon. We're all rooting for you to return to normal soon.

Sent by Marcy in NJ | 5:28 PM ET | 01-30-2008

Leroy, Normal? What is normal anymore? Seems just when you think you are headed in the right direction, something happens to remind us we are Cancer Patients. I hate Cancer, I hate it!! Perhaps we could get to Neverland somehow, and everything would be normal again. Normal would be wonderful! Thoughts and Prayers, Stan

Sent by Stan Wozniak | 5:43 PM ET | 01-30-2008

i hope tomorrow is better. i remember feeling like i just wanted a day off from cancer. no feeling badly, no talking about and mostly no thinking about it!!! in my thoughts and prayers, friend.

Sent by cv | 7:39 PM ET | 01-30-2008

Leroy and all,
Lori said it in the first comment--I HATE cancer. But it never took Leon's courage and spirit away--no matter what came his way, he always said "That's just a Part of It", meaning life, I guess. That is now printed on his headstone. Oh, I miss him so...but one thing I know is he is resting now. He doesn't sit up all night in a chair..trying to get comfortable and stop a cough that will not go away.
Hang in there,
Jane

Sent by Jane from Arkansas | 7:45 PM ET | 01-30-2008

I am really sorry to read the pain has gotten a little worse again. I completely understand your frustration! Sending vibes to the universe that it gets better soon.

Sent by N.R. | 7:50 PM ET | 01-30-2008

God bless us all, currently diagnosed with cancer or not. It is a privilege and an honor to be a reading and occasionally commenting member of this community.

Sent by Joyce | 7:56 PM ET | 01-30-2008

dearest leroy - for a change i only know to send you love and prayers - you are still so strong - you don't like what is happening to you - but you don't complain - you tell it - take care and prayers to you
love, jan

Sent by janice goldberg white | 8:04 PM ET | 01-30-2008

Leory, take thee to a pain management clinic (pretty please??).

You don't need to suffer. You can fight and be comfortable at the same time. In fact, pain is an awful thing to endure (preaching to the choir I know). It wears you down. Tell yourself "enough" and give a pain management clinic a try.

Do it for you. You do so much for others.

Sent by Karen D. | 9:00 PM ET | 01-30-2008

Hi, Leroy,

When you find out what normal is, let me know 'cause I haven't found it yet. ;)

Did anyone mention, I know you know this, that as you are healing and feeling better that you might do a bit more than your body was ready for and the body will retaliate.

I learned that the cancer and chemo just made all the arthritis and fibromyalia that much angrier. I find out in Feb if the cancer remission is stable.

I know it is frustrating when normal seems just in reach, just so close you can almost touch it with your finger tips, but it seems to scoot further away.

Reach for the goals you have set for healing and regaining movement, but remember to listen to the body and its warnings.

My thoughts are a little scattered tonight. We just found out that my husband's older sister (the younger one died of liver failure, June '07) is scheduled for a double mascetomy for breast cancer in both breasts. She has been a lung cancer survivor for 12 years. The new cancer is not lung cancer mets, but breast cancer from the biopsy results. They will do chemo and surgery, but radiation is out because she had part of one lung removed several years ago and she had radiation then.

Who needs a Biblical plague when you have cancer going around and mutating our cells when we aren't looking.

Take care. Thoughts and prayers always.

Bobbie in Texas

Sent by Bobbie Hollis | 11:38 PM ET | 01-30-2008

Dear Leroy,

Isn't it ironic that we don't appreciate "normal" when we have it.

I think that once we have had to deal with cancer, whether we are currently in remission or not, we never go back to "normal".

I am in remission yet it is almost always with me,
a sharp pain, an ache that doesn't seem to go away, newspaper articles, radio mentions, and worst of all when they use cancer as in "it is a cancer on society", I hate that one.

Everyone is afraid of the Big C, no one wants to believe that it could ever happen to them.

My sister smokes and it kills me !

If only the government had spent the money that they wasted in Iraq on finding a cure for cancer, maybe we would have a cure by now.

I guess I'm still angry. I hate it when I read that you are suffering. Take as many pain meds as you need.

love and peace my friend,

susan
california

Sent by susan | 12:27 AM ET | 01-31-2008

"One step forward, two steps back"

Hmm. If memory serves, isn't that the basic moves for the dance technique known as "moonwalking?"

'Course, I could never do it without those polyester tube socks on... and be careful on a older hardwood floor - splinters are an unwelcome possibility.

But anyway... thanks for your writings, I think we need you and your example much more than you need us, so we're sending prayers for everyone with cancer, that they may articulate in their own way, what it is they need from us.

John

Sent by John from Wantagh | 12:56 AM ET | 01-31-2008

Leroy, hopeing your day tomorrow will be better and less painfull. Hang in there.

Sent by dorothy in oregon | 2:47 AM ET | 01-31-2008

Hi,
I just found out a new online community where people can share their experiences, talk and communicate and connect meaningfully with others in similar conditions. I thought someone might be interesting in checking it out. Here's the link:
www.cancercancer.org

Sent by Vai | 4:36 AM ET | 01-31-2008

Hi there. I'm new to you. My husband was recently diagnosed with leukemia (he's young too - 43!) and I'm looking any/every where for inspiration. You amaze me. So much of what you say is so familiar. Especially the "redefining normal part" -- ohhh yes. I love your hope. Cracks are where the light shines in. Hang onto the hope. I will pray for you, too.

Sent by Allison | 7:26 PM ET | 02-04-2008